I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Saturday, July 27, 2013

Shared Parenting

My geneticist emailed me yesterday with the good news that
she has figured out a way to pull the DNA from paraffin block of breast tissue,
removed from me four years ago.No, I do
not understand, yet, what that all means.I do know that this was a problem, getting the DNA out, and one that she has
apparently solved (It is easier to achieve from a fresh or frozen sample, as I understand
it.) I will get back to you about the
details when she and I get together and chat in a few weeks.

Thinking about this, it occurred to me, that what we do here is complicated.This could be explained by the whole cancer
experience.Heck, that statement could
easily be justified by the simple fact that Dan and I have four children.But I am talking about genetics.Genetics and cancer are daunting things to
try to understand, and even more so to explain.

We can super-simplify things and say that we have a bad
cancer gene and because of that, we get cancer.But that really doesn’t explain it sufficiently, on any level.Medical, emotional, relational…the list goes
on.

You likely do not consider your genetics much, but they do
influence the way that we move in the world, more than we think.Aside from determining how much product I really
ought to use in this humidity (but don’t) to tame the ‘snakes in my hair’ as
Olivia likes to say, genetics in subtle ways define us, and nudge us in particular directions. And we seldom think about it much, as our cells divide millions upon millions of times, even as I sit
here writing this.

If you are lucky, you find that your genetics combine with
your passion, such that you can become a world class runner, for example.When they match up, it is easier to find
success.If you have a passion for
running, but have a less than stellar genetic make-up, you might have to
overcome your genetics with really hard work. My passion of late, my obsession perhaps, has
been helping my children beat cancer.I
would be the latter example, that while this may be my passion, I certainly
need to overcome my genetics.

Research indicates that children from two parent families
fare much better, in a host of areas.This is not surprising, given that when one parent gets tired, there is
a back up to step in and keep the youths from acting up.Once in a while, mom stays out late at book
club, but Dad makes dinner, handles carpool and the kids still brush teeth.If Dad works late or wants to golf all day on
Sunday, mom manages to pack lunches, read bedtime stories, and set out clothing
for Monday morning.It works better this
way.

Not that there aren’t successful single parents, but the
odds certainly favor any children from two parent households.This maxim continues to hold when you carry this analogy
to genetics.

Genetically, we are half of each of our parents, who share
the responsibility for what we become…blue eyes, brown hair, height…we all
understand this basic part of shared genetics in some way.But there are other more complicated jobs
involved, and monitoring cell division
to be sure that our genetic code is copied properly is among the most important
jobs.

If you consider that there are countless codes and
arrangements of proteins along our DNA that must be correctly copied each time
we make a new cell (I imagine a billion tiny monastic scribes, scribbling away
along the double helix), somewhere along the line, someone must supervise,
because the monks get old, tired or might just be hitting the sacramental wine.We are human and prone to error, after
all.P53 is the ultimate quality control,
or parental control, so that shoddy product doesn’t get out there and
replicate.There are supposed to be two
inspections of the work, each putting their stamp of approval on it.

With Brent and Lauren, genetically speaking, I have been a
pretty horrible parent. I never supervise their work, because I provided a non-functioning
P53 gene, utterly ineffective, completely indulgent of their misbehavior and “creative
license” in copying code.I never correct them, or keep them in check. I enforce no rules. As far as I am concerned, they can run wild
in the neighborhood, play music really loud, flunk out of school, cover
themselves with tattoos and generally become less than model ‘citizen cells.’And then reproduce.Umm, yes, that is cancer.

Dan, on the other hand, has been the genetic watchdog, the
good P53 parent, reading over homework, correcting their spelling, making sure
that they tow the line.Only three times
has his genetic supervision slipped up: once, in Brent’s 13 years, and twice in
Lauren’s 10 years, despite billions upon billions of cell divisions.

And I, for all of that time, have been gutter-drunk at P53, for
more than a decade.I failed to step up, and genetically
‘parent’ at these critical times.Other
moms do, which is why childhood cancer is so rare.It may be irrational, but there is a guilt
that comes with this understanding, and if not guilt, exactly, then certainly a
sense of responsibility.

Now, before you chastise me and point out that I didn’t
choose this for them, I am well aware, in
my head, that this was well beyond my control.But, as I like to say, what you know and what
you feel are not always in agreement.And it would be dishonest to suggest that this isn’t something that I
haven’t struggled with on some level at various times, this disconnect between
head and heart.

And probably, subconsciously, I try to compensate for that. Perhaps it is better said, I overcompensate. If I failed to be vigilant from the inside, at
the genetic level, I am hyper vigilant in their battle against cancer on the
outside, attuned to potential signs of problems, checking over the labs and
scans with the doctors.I am pretty
hands on, from the outside.

Dan said the other day that I write sometimes like I am a
single parent.This put me into a funk, one
that I couldn’t seem to shake, because he is integral to our story as a family,
and I consider him indispensable. I
cannot imagine doing any of this without him.
It occurred to me that my rather emotional response was likely due
to the irony that he has long been the single parent at the genetic level.I am aware that there is no logic in this. Because
so much about this doesn’t make sense, I am not going to fight it, but simply acknowledge it.

It is all so complicated, but at the same time, quite simple.We want the best for our children and we want
to be our best for them.Sometimes we have to overcome our genetics,
sometimes other circumstances.But we
keep working at it.

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.